final report on a project funded by the big lottery worlds-large-txt.pdf · final report on a...

!!!Deafblind Worlds !!!Final Report on a project funded by the Big Lottery

RG/1/010095274

Prepared by Deaf Studies Trust and Sense

!October 2012

Prepared by Jim Kyle and Susannah Barnett

[email protected]

[email protected]

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mailto:[email protected]:[email protected]

Deafblind Worlds - page !2

Acknowledgements

The project would not have been successful without the work of a number of people.

Staff at Sense - Liz Woodall who was the Project Administrator at Sense and Alison Bennett at Sense who supported and line managed the research work at Sense.

Anne Stygall at the Deaf Studies Trust who provided the firm base at Deaf Studies Trust

Debbie Harvey who was administrator and supporter to the project work.

Raychel Hills who worked with Andrea Tafurrelli.

And all the Deaf and Deafblind people who travelled to various centres and took part in the interviews and workshops.

Special thanks to our Steering Group of:

Dr Katia Herbst, Fiona Hall-Jones, Charlie Tyrell, and Linda Day.

And finally Professor Alys Young of the University of Manchester who not only attended the Steering Groups but also acted as a special as adviser to the researchers in the final reporting stage.

Initially the administrator of the project, Lucy Dunbar became the researcher charged with encoding and providing the initial analysis of the data. She contributed text to the final report which was finally compiled by Jim Kyle and Susannah Barnett.

Thanks to all

Deaf Studies Trust,  Vassall Centre, Gill Avenue, Bristol BS16 2QQ  


Table of Contents

Acknowledgements 2

Brief Summary 6 ..........................................................................................................................

Chapter 1: Introduction 10 .......................................................................................................1.1 Who are the Deafblind people? 10 .................................................................................................1.2 Experiences 11 ..................................................................................................................................1.3 Deaf People 13 ..................................................................................................................................1.4 Blind People 14 ................................................................................................................................1.5 Research on the Deafblind Experience 14 .....................................................................................1.6 Deaf and Deafblind people 17 .........................................................................................................

Chapter 2: The Study 19 .............................................................................................................2.1 The workplan 19 ..............................................................................................................................2.2 Schedule 22 .......................................................................................................................................2.3 Description of participants 22 .......................................................................................................

2.3.1 Deaf 22 .......................................................................................................................................2.3.2 Deafblind 23 ..............................................................................................................................

2.4 The method used for analysis 24 ....................................................................................................2.4.1 First Level Codes – Deaf Data 24 ..............................................................................................2.4.2 First Level Codes – Deafblind Data 26 ......................................................................................

Chapter 3: Deaf People’s views on contact 28 ...........................................................................3.1 Access 28 ..........................................................................................................................................3.2 Barriers 31 .......................................................................................................................................3.3 Lack of awareness 33 .....................................................................................................................3.4 Communication 34 ..........................................................................................................................3.5 Summary of Contact 38 ..................................................................................................................

Chapter 4: Deaf views on Community 39 .................................................................................4.1 Deaf Identity 39 ..............................................................................................................................4.2 Deaf Community ........................................................................................................................... 40 ............................................................................................................................................................4.3 Happiness ........................................................................................................................................ 44 ............................................................................................................................................................4.4 Dreams 45 .......................................................................................................................................4.5 Summary of Community 47 ...........................................................................................................

Chapter 5 Dealing with others 48 ...............................................................................................5.1 Deaf People on Deafblind 48 ..........................................................................................................

5.1.1 Time 48 .......................................................................................................................................5.1.2: Trust and Familiarity 49 ............................................................................................................5.1.3: Awareness 49 .............................................................................................................................5.1.4: Benefits of contact with Deafblind people 50 ...........................................................................5.1.5: Complexity of the nature of Deafblindness and its definitions 50 ............................................

5.2 Isolation 52 .....................................................................................................................................5.3 Independence 53 .............................................................................................................................5.4 Reliance on others 55 .....................................................................................................................

Chapter 6: Personal Circumstances of Deafblind People 57 ..................................................6.1 Independence 57 ............................................................................................................................

6.1.2 Independence and Self Fulfilment 58 .........................................................................................6.1.3 Independence in an Environment 59 ..........................................................................................6.1.4 Independence – being the ability to make a choice 59 ...............................................................6.1.5 Perceptions of Independence 60 .................................................................................................


6.2 Isolation 60 .......................................................................................................................................6.2.1 Isolation – Research Limitations 61 ...........................................................................................6.2.2 Isolation and Environmental Experiences 61 .............................................................................6.2.3 Social Isolation 62 ......................................................................................................................6.2.4 Choosing to be ‘isolated’ 62 ......................................................................................................6.2.5 Effects of Isolation as seen in ‘Others’ 63 .................................................................................

6.3 Awareness of Physical Environment 63 ........................................................................................6.3.1 Use of the Senses 63 ...................................................................................................................6.3.2 Vision 64 .....................................................................................................................................6.3.3 Touch 64 ....................................................................................................................................6.3.4 Hearing 65 .................................................................................................................................6.3.5 Other Senses 66 ..........................................................................................................................6.3.6 Combination of Senses 66 ..........................................................................................................6.3.7 Interpretation of Information 66 ................................................................................................6.3.8 Augmented Lighting 66 ..............................................................................................................6.3.9 Obstacles at home 67 ..................................................................................................................10. Other Strategies used to gain Environmental Information 69 .............................................6.3.11 Information Provided by Others 69 ..........................................................................................6.3.12 Information gained through Technology 70 .............................................................................6.3.13 Summary 70 .............................................................................................................................

6.4 Imagination 71 ...............................................................................................................................6.4.1 Imagination and cognitive maps 71 ............................................................................................6.4.2 Using the imagination and cognitive maps 71 ...........................................................................6.4.3 Imagination and Memory 72 ......................................................................................................6.4.4 Summary 73 ...............................................................................................................................

Chapter 7 Feelings and Hopes 74 ...............................................................................................7.1 Emotions 74 .....................................................................................................................................

7.1.1 Reflections on state of Mind 74 .................................................................................................7.1.2 Factors which Trigger a Change in Emotion 75 .........................................................................7.1.3 Material Factors 75 .....................................................................................................................7.1.4 Social Factors 75 ........................................................................................................................7.1.5 Employment 77 .......................................................................................................................... 7.1.6 Personal Factors 77 ...................................................................................................................7.2 Feelings of Confidence and Control (DB7) 77 ............................................................................. 7.2.1 Confidence and Self-Assuredness 78 ........................................................................................ 7.2.2 Confidence and Familiarity 78 ..................................................................................................7.2.3 Confidence and Gaining New Skills 78 .....................................................................................7.2.4 Confidence and Communication 79 ...........................................................................................7.2.5 Confidence and Contact 79 ........................................................................................................7.2.6 Confidence and Support From Others 80 ...................................................................................7.2.7 Confidence and Control 80 .........................................................................................................

7.3 Feelings of Insecurity 81 ................................................................................................................7.3.1 Unknown Environments 82 ........................................................................................................7.3.2 Other Things Happening in the Environment 83 .......................................................................7.3.3 Perception of Self within the Environment 83 ...........................................................................7.3.4 Vulnerability 84 ..........................................................................................................................7.3.5 Aloneness 84 ...............................................................................................................................7.3.6 Control 84 ...................................................................................................................................7.3.7 Concerns and Worry 85 ..............................................................................................................7.3.8 Communication / Meeting New People 85 ................................................................................7.3.9 Insecurity in relation to Future Events 86 ..................................................................................7.3.10 Summary 87 ............................................................................................................................

7.4 Future Plans/ Dreams 87 .................................................................................................................7.4.1 How Deafblind People Reflect on the Future 87 .......................................................................7.4.3 Hopes and Plans for the Future 88 .............................................................................................


7.4.4 Person Centred Aims 88 .............................................................................................................7.4.5 Hopes requiring others to intervene 90 ......................................................................................7.4.6 Being Deafblind in the Future 90 ...............................................................................................7.4.7 Issues Identified which prevented Hopes and Plans being achievable 91 .................................7.4 8 Summary 93 ...............................................................................................................................

Chapter 8: Other people 94 ........................................................................................................8.1 Contact with Deafblind People 94 .................................................................................................

8.1.1 Opportunities for meeting other Deafblind people 94 ................................................................8.1.2 Starting Conversations 94 ..........................................................................................................8.1.3 Issues in meeting with other Deafblind people 95 .....................................................................8.1.4 Summary 96 ...............................................................................................................................

8.2 Contact with Deaf People 96 ...........................................................................................................8.2.1. Positive Contact with Deaf People 97 .......................................................................................8.2.2. Issues Preventing Contact with Deaf People 97 ........................................................................8.2.3 Perceptions of Deaf people’s Understanding of Deafblindness 98 ............................................8.2.4 Summary 100 .............................................................................................................................

8.3 Awareness of others 100 ..................................................................................................................8.3.1 Awareness of Others through Direct Contact 100 ......................................................................

8.4 Information provided by guides 101 .............................................................................................8.5 Communication choices affects awareness of others. 101 ............................................................8.6 The ‘Deafblind friendliness’ of the environment 103 .................................................................8.7 Control 104 .....................................................................................................................................8.8 Interpretation of contact 105 ........................................................................................................

8.8.1 Summary 106 .............................................................................................................................8.9 Involvement of Others 106 ..............................................................................................................

8.9.1 Relationships with Family Member, Friends and Other non-Professionals 106 ........................8.9.1.2 Family and friends as ‘interpreter’ 109 ..............................................................................................8.9.1.3 Family as Guide 110 ..........................................................................................................................8.9.1.4 Help with child care 110 ....................................................................................................................

8.9.2 Friends/ Neighbours 110 ............................................................................................................8.9.2.1 Friends as Guides 110 ........................................................................................................................

8.9.3 Involvement of Professionals 112 ..............................................................................................8.9.4 Use of Interpreters and Guides 112 ............................................................................................8.9.5 Changing Guides 117 .................................................................................................................8.9.6 More than one guide 117 ............................................................................................................8.9.7 Guide implications 117 ...............................................................................................................

Chapter 9: Reflections 119 ..........................................................................................................

Chapter 10: Conclusions and final points 126 ..........................................................................10.1 Benefits of the project 126 ...........................................................................................................10.3 The nature of the Researchers 127 ..............................................................................................10.4 The Partners in the Research 127 ...............................................................................................

Reference list 128 ........................................................................................................................

Appendix 1: 130 ........................................................................................................................

Appendix 2 136............................................................................................................................


Brief Summary

To date, there has been no clear description of the experiences of Deafblind people. Deafblind Words was set up to meet with Deafblind 1people to talk about their lives and experiences. The aims were to a) examine the experience of being Deafblind b) determine if this was similar to Deaf people’s experience c) discover if Deaf and Deafblind people could work together

In Deafblind Worlds, we adopted the perspective of the Deafblind person. The researchers were Deafblind. Their analysis shaped the questions and the methodology. Deafblind people were in the Steering group. Deaf blind people were re-visited and in groups, discussed the findings. The project was carried out wholly in British Sign Language (BSL) or the Deafblind variants, such as hands-on signing or with the use of Deafblind manual alphabet. We interviewed 21 Deafblind people and 38 Deaf people. They lived in Scotland, England and Wales. They were aged from 21 to 66 years with a range in gender, employment and marital status. Researchers made visits to each person individually to explain the project. Individual interviews then followed.

The Results: Deafblind People

There were fifteen females and six males. Forty-one percent were aged 21 to 35 years. Around 85% had a hearing loss since before the age of five years. Forty-one percent had acquired a sight problem by the age of ten years. Around 90% could not hear at close quarters; however, over a third were able to see at a distance of a metre in front. Most (77%) used BSL by preference but rather less were married or living with a partner (only 27%) compared to the usual for Deaf people of (over 50%).

Deafblind people feel independent in different ways from the usual way that carers and service providers think about it. Independence is more about the decision-making of whether to request assistance than the actual assistance. Deafblind people think about these choices in terms

Throughout, we use the term Deaf (capital D) to refer to sign language users who are members of the Deaf 1

community. Deaf implies a cultural affiliation. Deafblind (capital D) is used to refer to people who communicate primarily in sign language mode (either by BSL, or hands-on signing or by the use of a manual alphabet or by a personal manual system).


of their own challenges, not in comparison to what society thinks of as normal.

Most people think Deafblind people are isolated but Deafblind people considered that the key variable was the extent to which they could control the environment and control their interactions.

The reports of the experience of a Deafblind person in a group were unexpected. Deafblind people may be unaware of who is in the group and what they are doing. We found that Deafblind people attending Deafblind meetings often had no idea how many other Deafblind people were there. We found, sometimes, that Deafblind people were communicating through a guide/interpreter to another guide /interpreter to a second Deafblind person … instead of directly.

Our results show that Deafblind people may find it hard to think about the future but much easier to think about what is happening now. Deafblind people may worry about losing their eyesight in the future.

We found that some Deafblind people have never met another Deafblind person while some Deafblind people only have friends who are also Deafblind. Most Deafblind people do not have experience of communicating in a group.

We discovered that many people continued their involvement with the Deaf Community but other people said they did not go to the Deaf club. This was because they felt ‘it was boring, Deaf people ignored them and Deaf people did not know how to communicate’.

The Deaf community was not seen as a friendly environment by many people.

Deafblind people can lose confidence and feel insecure as a result of loss of control of the situation.

We found that employing guides is the means for Deafblind people to go out of their home. This can mean that they feel independent. Other people said they HAD to use a guide and HAD to accept this, but this meant that guides were not seen as a positive part of Deafblind person’s


life and ... in any case, booking of professional services is done through organisations. Deafblind people feel restricted by this as they cannot have a guide when they want. Sometimes the guide they were expecting was changed at the last minute. Sometimes it meant they could not stay out as long as they wanted.

The provision of guides may be seen as ‘solving a problem’ of providing a way Deafblind people can get out of their homes with someone who can facilitate communication – the Deafblind person is therefore seen by service providers as becoming more ‘independent’. Yet through this process, Deafblind people become more dependent on organisations and the Deafblind person’s control of his/her own life has been reduced.

Deaf people’s responses

A total of 38 Deaf participants were interviewed. Of these, 36 transcripts were used in our analysis. There were 20 men and 55% were married or living with a partner. Seventy-six percent were white – a low figure which was partly due to trying to find more people in ethnic groups. The average age was 42 years. Almost all (95%) could not hear speech. Over 80% said that they preferred to sign and to be signed to. Only 45% were in work. In the Deafblind group only 18% were working. Most of the group claimed to be in contact with other Deaf people and with the Deaf community at least weekly.

Deaf people said they did not know how to communicate with Deafblind people. It was as if Deafblind people were “foreigners. Deaf people valued ease of communication and said Deafblind people were slower and different. Deaf participants thought Deafblind people were ‘hard work’, requiring patience, and forcing on them a responsibility that they were reluctant to accept. Although we believed that Deaf people and Deafblind people were similar we now think that it would be difficult to bring them together.

Conclusions

Although there is much in common in Deaf and Deafblind experience, there is a gap in the perception of the two groups with respect to each


other. Deaf people at present see Deafblind people as different and time consuming.

Deafblind people do not form groups. While somewhat simplistic, it is however, intensely significant. Many of the Deafblind people we met, had never been able to discuss their experiences with another Deafblind person. Even those who attended meetings where there were other Deafblind people were seldom able to carry out direct conversations with other Deafblind people.

The limitations which are inadvertently created by the provision of guides ensures that Deafblind people have hitherto been unable to form social groups. There are significant obstacles to conducting Deafblind-only meetings such as how to overcome the limitation of pair-wise interaction, that is Deafblind people can only talk to one person at a time.

Relationship with the guide has turned out to be a major issue and one which will require further more detailed study. Deafblind people rely on guides but wish to have more control over when, where, how and with whom the associate.

There were many superficial contradictions in the results but most can be resolved when we listen to the experiences and aspirations of Deafblind people.

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Chapter 1: Introduction

1.1 Who are the Deafblind people?

Persons are regarded as Deafblind if they have a degree of combined visual and auditory impairment resulting in problems of communication, information and mobility (Deafblind Services Liaison Group 1993). The exact nature, cause and level of sensory loss varies among people; however the feature common to individuals who are Deafblind is that they have some significant deprivation in the use of the distance senses (McInnes 1999). In the UK, it was in the past estimated that there were over 23,000 Deafblind people (Deafblind Services Liaison Group, 1993). The majority of people who are Deafblind are elderly, estimated at 14,000 Deafblind people (Sense, 2002).

These figures have been radically revised in the Sense commissioned report by Emerson and Robertson (2010).

We estimate that in 2010 approximately 132,000 people in the UK have more severe impairments of both hearing and vision (66,000 women and 65,000 men; equivalent to 212 people per 100,000 of the general population) and that approximately 356,000 people in the UK have impairments of both hearing and vision (193,000 women and 163,000 men; 572 per 100,000). Nearly three quarters of all people with more severe impairments of both hearing and vision are aged 70 or over. (Page 3)

The report is based on analysis of existing data sources and does not give a clear indication of extent of hearing loss or visual impairment. It makes it difficult to determine the numbers in the population categories which we have to examine. However, it does point to a likely increase in the overall group as the population as whole is becoming older.

The population includes

1.People with congenital Deafblindness (ie those who are born or become Deafblind before they could learn to speak). For individuals born Deafblind, awareness of the world around is often limited to touch and . Communication difficulties may affect


progress in education and may reduce interaction with other people. Some individuals will have complex additional physical and/or learning disabilities.

2.People born with a hearing loss who later acquire a sight disability. They include

a)those who are hard of hearing and choose to use English to communicate and are more likely to interact with members of hearing society, and

b)culturally Deaf people, users of sign language, who are members of the Deaf community.

3.People born blind, who develop a hearing loss later in life.

4.People who acquire both hearing loss and sight problems later in life.

This study deals predominately with groups 1 and 2b, whose communication choice is sign language, possibly adapted to include gestural and physical means of communication. As a crude estimate, this group may be 5,000 in the UK – in the age range 18 years to 65 years. However, there is not a good base of statistics for this group. We predicted that this group were most similar in outlook and experience to Deaf people. They may also be the most challenging for service providers.

Those in groups 2a, 3 & 4, are culturally hearing, and their communication choice is likely to have been English speech.

In this report when we use the term Deafblind, we are referring to groups 1 and 2b.

1.2 Experiences

Although it seems obvious in all areas of research, that a first step should be to understand the perspective of those with whom you are working, there has been very little attempt to understand the world which a Deafblind person inhabits.


Although some elements of the Deafblind person’s understanding can be learned through autobiographical work written by Deafblind people e.g Smithdas, 1958, and Stiefel, 1991, the case of Helen Keller remains possibly the only detailed account which allows us to understand the way in which a Deafblind person experiences the world around. A more recent study by Schneider (2006) mentions the concept of ‘experiencing interactional powerlessness’. The remainder of the literature appears to focus on children, on assessment techniques and on service provision.

From the few studies, we can project a world view which relies on touch and taste and imagination but into which we have not been prepared to venture further. Of course, the situation is complicated by the major individual differences within the group. However, there seems little doubt that service providers could benefit greatly from a better understanding of the views and perceptions of Deafblind people.

As indicated, research into Deafblindness in adults often focuses on aspects of incidence and costs to service (although the work of Moller, 2008, described below offers more analysis of the interface between Deafblind experience and services).

There are 53 studies listed in the Laurence Report (for the period between 1983 and 2000). All follow the trend of trying to identify within the UK community, those with a dual sensory problem in order then, to carry out a needs assessment and provide a set of recommendations. The vast majority of studies have been carried out by, or in conjunction with, social services departments or Local Authorities and usually by people who do not themselves have direct experience of dual sensory problems. Often such studies are limited to determining incidence, establishing definitions and are governed by finance-led concerns on policy and provision.

Other studies focus on understanding causes of Deafblindness e.g specific implications of Deafblindness such as the effect Deafblindness has on communication e.g. Woodford, 1987, Reed & Floyd 1998, Naish 1999, or the effects Deafblindness may have on the family unit e.g Singh & Guest 1991.


In the USA, Macdonald (1994) and Spear (1994) explore Deafblind Culture within their own country and offer some insights into the lives of Deafblind people. Kilsby and Cook (CAUSE, 2003) undertook a comparative survey of how people with Usher Syndrome in 6 different European Countries (including the UK) maintain their independence. Although on the surface this survey sets out to study lifestyle, the report limits itself to focusing on factors of communication, mobility, access to information and the impact that Usher Syndrome has on these elements. It tends to focus on services and the obstacles a person faces but does not go beyond this to look at lifestyle experiences and perceptions of those people.

As far as can be determined there has been no study of the personal experiences of those who are Deafblind within the UK, other than Barnett (2002) which is discussed below. The experiential studies which have been carried out tend to concentrate on Deaf people (e.g Ladd, 2003, Padden 1980) or on blind people (Higgins & Ballard 1999, Tobin 1998).

1.3 Deaf People

We have established that Deaf people form a dynamic community based on use of sign language – a language which can be traced back at least 400 years. Deaf people are said to establish their primary ties at school and develop their community affiliation through social contact in Deaf clubs and other meeting places. As Deaf schools have reduced in number, the early socialisation has changed and technological means for interaction have appeared – textphone, texting on mobile phones and even videophones. Deaf clubs have seen reducing attendance while young people seek more appropriate youth culture venues for meeting. However, no matter the location, the same transactions occur where Deaf people can meet others and share experiences, often having travelled long distances, and where the human basic need for interaction can be experienced.

At the same time, we can see that the opportunity for community interaction forms only a small part of daily life, the major part of which is lived among hearing people – where interaction is limited. It used to


be said or thought that Deaf people became community members only when they were in direct contact with each other (Kyle and Allsop, 1982) but the texting facility on mobile phones has brought an immediacy of distant contact which acts to allow people to feel in contact without seeing the other person.

We should not use the word “isolated” to mean physical distance, since Deaf people see and experience other people, everyday. The personal fulfilment of Deaf people comes not from being physically close to others, but from being in meaningful dialogue with others. This is important within the context of this project since by comparison with, but unlike Deaf people, we consider that Deafblind people seldom have the opportunity for this meaningful dialogue. This point is crucial to our understanding.

1.4 Blind People

In the case of blind people, the saying that they have an isolation from things not from people, is a useful starting point. The experiences of blind people have been much more extensively documented. Blind people are more closely integrated into the hearing community, are more visible to hearing people and have experiences to which hearing people believe they can relate. Since they are united with hearing people, usually through a shared common spoken language, there is greater access to the experiences of sighted people and obviously greater dialogue. In this way, blind people differ from both Deaf and Deafblind people for whom such a dialogue does not exist.

Research into the Deaf experience and blind experience offers some useful comparisons. However Deafblindness is not simply a combination of being Deaf and blind but is a unique condition which has its own experience.

1.5 Research on the Deafblind Experience

Barnett (2002) for the first time and from the perspective of someone who is Deafblind, collected data on experience, through interviews and email contact with nine people with acquired Deafblindness.


The study found no established community or specific culture among Deafblind people. However Barnett (2002) found that Deafblind people do have a unique experience involving a number of different factors and which appear to be common among individual Deafblind people - such as ways of perceiving and making sense of the world through touch and imagination.

Deafblind people use touch in a number of ways: for receiving information about their environment, for communication and also as a feature of general behaviour. Although the study is limited in size, there are implications from the data which contribute to understanding the lifestyles of Deafblind people:

• The ideal Deafblind environment is reported to be where the sense of touch is most stimulated. Different textured surfaces, areas of floor covering which allow vibrations to be felt and objects which are easily recognisable through a standard shape are consistently reported in regard to mobility.

• Touch is seen to be vital in communication not only as manual communication but also in non-linguistic communication e.g. in detecting personality and emotion of the conversation partner. Deafblind people, when introduced to individual people physically, claim to be able to determine personality and mood.

• The use of imagination is an essential part of the Deafblind 2experience. Deafblind people use information obtained through the senses and from past experience to make sense of their environment and to provide a context into which they place themselves. Imagination is the process which drives this and is a crucial process to give meaning to the experience (and to prevent Deafblind people from living in a void). The practical implications of this include the need to have internal creative descriptions of their surroundings. Communication aides can provide environmental detail such as

Imagination is taken to mean the active process of internal construction of the world – the representation 2

which is built up jointly from sensory information, even when it is limited, from past experience and from internal creations – i.e. by imagining what it might be like.


locations of furniture, the size of the room, the weather, or sources of sound.

As well as the importance of touch and imagination, Barnett (2002) also described the Deafblind experience as being in the present tense, i.e. without knowledge of the sequence of events. Deafblind people are not always aware of an event until it happens and contact is made in some way. Events are often not predicted, but seem to occur in isolation. Once the event has passed or contact had been broken, the Deafblind person is again left not knowing what happens next. This appeared to be a common element of the Deafblind experience.

Further to this, Barnett (2002) proposed the idea of the Deafblind person as an island - both the physical isolation which many Deafblind people experience and the social isolation resulting from limited contact with other people. However the reports of the Deafblind participants highlighted the importance of the times when Deafblind people come together and communication is achieved – even when the content of the communication is relatively minor, positive feelings of well-being arose. These factors are significant because these become the fundamental conditions for community development – shared experience and interaction

On the basis of the research we can support the view that the lack of sight and hearing produces a void in stimulation and information content. This removes the basis of social interaction and creates an island, in which imagination has to sustain the personal well-being of that individual.

While hearing-sighted individuals may claim to have had experience of isolation, they can seldom know the continued lack of contact which is the daily life of the Deafblind person. Empathy with such individuals is very difficult.

The Deafblind experience is the result of a unique condition of impairment to both vision and hearing. Whilst hearing-sighted people cannot share this experience, it is believed there are some elements of shared understanding between Deafblind and Deaf people.


1.6 Deaf and Deafblind people

Although the lack of hearing from an early age can be said to produce a reduction in stimulation, discoveries about Deaf people’s language and culture suggest that Deaf people are able to circumvent the limitations. What Deaf people have developed for themselves (often in direct opposition to the pressures of society and even of families) is a fully functioning linguistic minority with an active community life, inter-marriage and cultural expression. The Deaf Community is built on a visual and spatial representation of the world around them, whilst the shared language, community life and mobility of its members create the possibility to communicate and share this world experience. The variation in Deaf people’s experiences in childhood and adult life in all of these aspects, leads one to view the Deaf community as a rich and varied society which tolerates diversity in its communication and patterns of exchange.

However, there are no formal care structures or support systems within the Deaf community to deal with other Deaf people who are at risk – e.g. elderly people. There is awareness of the need to support Deaf children in hearing families and there is considerable progress in counselling for those with adjustment problems and notably for Deaf women’s health. As yet, these applications are incompletely developed or arise wholly as an adjunct to a hearing-led service. To date, like Deafblind people, Deaf people have been considered mostly as recipients of service rather than providers of service. The Deaf community is not empowered to support others.

In our initial group 2b, there are many Deaf community members, who later became Deafblind. However their position in the Deaf community is weakened as their sight declines and they are often to be found only in the margins of society, and then as elderly people, may disappear off the radar altogether. In terms of group 1, those with congenital Deafblindness may use visual/spatial communication methods and use behaviour patterns based on gesture and touch. Given the potential shared primary cultural experiences and possible similarities of language use and behaviour patterns, there is an argument for exploring the relationship of Deaf and Deafblind people.


Although there are some examples of Deaf people in communication and contact with Deafblind people, (e.g Deaf people taking some of the CACDP Deafblind Qualifications, including the 30 or so Deaf staff members who currently work supporting Deafblind people in services at Sense) there has been no attempt to date, to try to understand the community relations and the shared experiences which could support a more coherent interaction, particularly within the context of service provision.

Put very simply, the closeness of Deaf and Deafblind experience means that Deaf people may be better at reaching Deafblind people in communication and in empathy.

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Chapter 2: The Study

2.1 The workplan

There were two phases/aims to the project:

• To explore the Deafblind experience (particularly in comparison with that of Deaf people);

• To test a framework for interaction and support by Deaf people for Deafblind people.

All interviews have been carried out by peers – i.e. Deafblind researchers for Deafblind participants and Deaf researchers for Deaf people. A range of communication approaches have been taken with the Deafblind participants – BSL, manual alphabet and hands-on signing; interviews with Deaf people were conducted in BSL.

Phase 1: (12 months ) There were four components: 3

• Individual interviews (months 6 -18)

• Group meetings (months 14 to 20) for Deafblind people;

• Interviews with Deaf people (months 6-12); and

• Survey of Deaf organisations and independent initiatives in this area (months 4 to 6).

The core group were 20 Deafblind individuals (chosen from a larger group of potential interviewees) aged between 21 years and 65 years (7 aged 21-35 years; 7 aged 36-50 years; and 6 aged 51-65 years), representing a range of people of employment age, gender, location; it included also BSL signers, those using the Deafblind manual alphabet and those using hands-on signing. It has proved more difficult to find older Deafblind people. Participants were chosen to represent the UK but also in groups, with a target of at least 4 individuals within relatively

The time scales for the project are lengthened from the norm, because of the complexity of arranging a 3

Deafblind researcher to travel to various locations in order to meet with other Deafblind people. Also, we should not minimise the additional communication issues of working with this group – for every stage of the research.


close geographical proximity. The participants are almost exclusively those who have acquired blindness after being Deaf.

These first interviews collected data to build up characteristics of the ‘Deafblind experience’. The interviews dealt with aspects of communication, behaviour, touch, imagination, social interaction and lifestyle as well as specific experiences of meetings, and opportunities for social contact through other means eg e-mail. Contacts with Deaf people, the Deaf community and relation to the Deaf experience were also examined.

The interviews also explored the service and support concepts as perceived by Deafblind people. These were specialist service provision e.g. services provided by social services, other agencies, interpreters, guides. We were unable to establish the presence/effectiveness of the range of service provision based in the Deaf community – our survey indicated that none existed – Deafblind people were perceived as separate by Deaf clubs.

In the second phase of the study, opportunities were set up where Deafblind people could interact with each other. This activity is complex requiring communicators and facilitators but we believed this could be of great benefit as it would allow Deafblind people to try out ideas with each other. In this case, the groups were focused on themes which have emerged from the interviews in regard to Deafblind world views as well as aspirations for contact and service.

The third component allowed Deaf people to express their views on the same topics as those of the Deafblind participants i.e. to allow for comparison between experiences. Concepts of service, responsibility, community membership were explored. Current perceived extent of interaction between the two communities was also examined.

Thirty-eight Deaf people were interviewed in the same geographical areas as the Deafblind participants as it had been intended to create matched pairs in regard to gender, age. (This proved to be impossible in the end). They were advised from the outset that the aim was to work


with Deafblind people and there would be some commitment to take part in the second phase of contact with Deafblind people.

The analysis used qualitative methods to establish themes emerging from interviews and group sessions. The software program N6 (now NVivo) was used to organise the English transcript of the BSL interviews (prepared by Deaf researchers) and to offer an analysis base. In certain sections, quantitative methods were used to summarise the gathered numeric data and preferences (indicated on scales).

As the fourth component, a survey of local authority social services and other agency support (interpreters, guides) was carried out. The aim was to investigate current types and range of provision – specifically to establish which groups of people e.g hearing-sighted, Deaf, blind - are currently involved in service provision, and also to establish the provision that is made for Deafblind people to meet and to interact as a group. This was a traditional survey with postal questionnaires, followed up by telephone/textphone and with statistical data analysis of the responses. The survey indicated no coherent provision nor indeed any real commitment to providing for/ supporting Deafblind people.

Phase 2: (months 18 to 30), the project was set up to bring together Deaf and Deafblind people, firstly in workshops in a range of locations and then in one to one contact (based on pairing of those interviewed), to monitor interaction and to elicit reports on this experience.

As a precursor to this interaction, both groups had feedback on the results from the first phase. Deaf community members were also provided with general background data on those who are Deafblind (they had a Deaf Blind Awareness mini-course). The workshops were driven by the themes which had emerged and the interaction was facilitated by Deaf and Deafblind researchers.

This phase was designed to test the proposal for Deaf-Deafblind interaction and to consider how this may support a new service model. The data collection could not be wholly specified in advance as it had to arise in the expressed wishes of the participants. Proposing a detailed model of Deaf service, based on existing experiences in care and


support to Deafblind people, would have defeated the object of the research and removed the component of empowerment and choice which is so vital to the research and development in the project.

(Note: the Deaf-Deafblind sessions could not be arranged as part of the data collection and occurred only in the final dissemination workshops.)

It is true there are training implications, financial aspects, and locational feasibility issues, but the bringing together of Deafblind people firstly and then the interaction with Deaf people is considered a major achievement of the project. The fundamental point was to provide the platform for Deafblind people to communicate their needs in this respect and then to bring them into contact with Deaf people because they may be closer to them in terms of experience.

Separate group meetings of Deaf people and of Deafblind people were achieved and some Deaf-Deafblind sessions were arranged as part of the final dissemination phase. The latter proved extremely difficult to coordinate as Deaf people showed little enthusiasm and there were enormous complications in trying to arrange the guides for the Deaf blind people’s attendance. The issues arising from these attempts to create the groups are set out in the Deafblind field notes chapter.

2.2 Schedule

The project was arranged in a set of work packages with a series of tasks to reflect the pattern of work described above. This was used as the primary management tool.

2.3 Description of participants

The interviews were held in Cardiff, London, Bristol, Birmingham, Glasgow, Peterborough and Preston (Deafblind only).

2.3.1 Deaf

A total of 38 Deaf participants were interviewed. Of these, 36 transcripts were used in our analysis – ie those who had complete data.


There were 20 men and 55% were married or living with a partner. Almost all (36) of the group claimed to have a hearing loss before the age of five years (73% from birth). Seventy-six percent were white – a lower percentage than the national which was partly due to ensuring that we included more people in ethnic groups. The average age was 42 years with an even spilt into three age groups 21-35 years, 36 – 50 years and 50 year plus. Almost all (95%) said that they could not hear speech but only 38% claimed that they had learned BSL before the age of five years. This figure is a little different from the national figures (around 50%) described in Kyle and Allsop (1998). The fact of learning BSL late has a major impact on a range of linguistic aspects of language use and is likely to have an impact on interpersonal communication. However, because Deaf children are born in hearing families, typically more than half (in Europe) do not learn sign language until they arrive at school (Kyle and Allsop, 1998).

Over 80% said that they preferred to sign and to be signed to, while the remainder suggested that a mixture including writing down was acceptable.

In terms of employment, 45% claimed to be in work while the remaining 55% included students and housewives and 5% who said they were retired. This contrasts markedly with the Deafblind group where only 18% were working.

2.3.2 Deafblind

There were seven males and fifteen females. Forty-one percent were aged 21 to 35 years. Around 85% of the group had a hearing loss since before the age of five years. Forty-one percent had acquired a sight problem by the age of ten years. Around 90% could not hear at close quarters; however, over a third were able to see at a distance of a metre in front of them. Therefore we are not dealing with a group who have no access through sight at all. Most (77%) said they used visual BSL by preference but rather less were married or living with a partner (only 27%) compared to what would be considered usual for Deaf people of over 50%. Very few were working, with the largest group (41%) declaring themselves unemployed.


2.4 The method used for analysis

Following translation/transcription as previously described, all interviews were read several times in order to identify recurring themes. These themes were concepts, descriptions, recurring words/phrases, feelings/emotions, issues of context, behaviours, general expressions of appraisal. From an initial long list, a short list of 12 major themes was established. The themes do not necessarily summarise or apply to all aspects of the data collected but only to those elements that are pertinent to the original research questions. The themes were discussed within the research team to establish agreement.

We used the QSR N6 sort and retrieve qualitative software program. The themes were made into first level codes to be applied to relevant sections of data. This coding enables the data to be reorganised from individual narratives (organised by participant) into thematic groups of data that cut across all participants. In this way it was possible to

(i) identify the extent to which the theme is of significance across all participants, including the identification of divergence i.e. patterns of difference are as important as patterns of similarity;

(ii) to describe in detail what constitutes the theme including its conceptual elaboration;

(iii) to identify key examples of the theme area. The organisation of the data in this way also enables the tracking of the influence of particular characteristics on kinds of response (e.g. gender, communication preferences).

2.4.1 First Level Codes – Deaf Data

The following provides a list of the codes used to organise the data and their basic definition as they were applied to Deaf participants. They are not a summary of results, but rather a statement of the intended meaning and boundaries of the codes that have been applied to the data.


D1 Access Access to information or services, perhaps through sign language, interpreters, lip-reading, subtitles or support from others.

D2 Barriers Deafness itself, negative perceptions or lack of awareness of others, lack of linguistic access, lack of confidence or insecurity.

D3 Community Contact with others, Deaf community rules and customs, feelings, attitudes, duties.

D4 Dreams Hopes, aims, ambitions for the future.

D5 Lack of awareness experiences of others' lack of awareness, feelings about and impacts of lack of awareness.

D6 Isolation  Isolation from people, information and services – experiences of isolation, feelings about isolation, impacts of isolation.

D7 Attitude towards Deafblind Experiences of contact with Deafblind people, perceptions of Deafblind people and their lives, attitudes towards them and their involvement with the Deaf community

D8 Communication  Preferences of communication methods, experiences of communicating with others, impacts of easy or difficult communication, strategies employed in communicating

D9 Deaf Identity Expressions of Deaf identity, perceptions of Deaf identity, impacts of Deaf identity.

D10 Happiness Expressions of happiness and unhappiness, what makes Deaf happy and unhappy.


D11 Independence Feelings of/about independence, expressions/perceptions of independence.

D12 Reliance on others Examples of needing support from others, examples of others relying on participants for support, attitudes towards relying on others.

2.4.2 First Level Codes – Deafblind Data

DB1 Independence   Feelings of independence/ skills used to gain independence/ times when can be independent

DB2 Isolation  Feelings of isolation/ skills used/ times when isolated

DB3 Hopes/ Plans/ for the future

Plans/ aims/ dreams/ things want to achieve. Fears for future.

DB4 Contact with Deafblind  Opportunities for meeting/ communication/ feelings towards other Deafblind people/ conversations / establishing understanding.

DB5 Contact with Deaf people  Opportunities for meeting Deaf people/ communication/ feelings towards Deaf/ perceptions of how Deaf people view Deafblind people

DB6 Emotions  Types of emotions and their reasons/ influences

DB7 Feelings of confidence, control

Situations when this occurs and the reasons

DB8 Feelings of insecurity, loss of control


Situations when this occurs and the reasons

DB9 Awareness of others  Ways in which Deafblind people are aware of others and the level of importance attached to knowing

DB10 Awareness of environment

Skills used to make sense of environment

DB11 Imagination   Ways in which the imagination is used

DB12 Use of others   Use of Guides/ interpreters/ Family members / feelings towards the involvement of others

!The transcripts were examined repeatedly for content relevant to each topic and then the relevant “quotations” were collated using N6 and then analysed.

!


Chapter 3: Deaf People’s views on contact

The analysis below (in the next three chapters) examines the transcribed interviews in relation to each of the main themes in turn. These reflect the issues which were uppermost in Deaf people’s minds when they were being interviewed.

3.1 Access

Thirty-four of the Deaf respondents reported experiencing barriers to access across a broad range of areas, primarily in terms of linguistic access. From their perspective, these experiences indicated the necessity of sign language interpreters, subtitles and communicating directly with others who could sign and also dissatisfaction with the convenience, affordability and suitability of such support structures. These issues have been widely reported in other studies relating to Deaf people (eg Kyle et al, 2005) and to a great extent, are the expected findings.

Twelve of the participants, ranging from age 26 to 60 years, who described difficulties with access reported experiencing frustration, stress and insecurity as a result of lack of access. Although these feelings were mainly responses to particular situations described by the participants, they appeared to exemplify a recurring rather than a one-off experience. For example:

“It's really hard, I have to keep moving seat. I have to listen if they call my name, because the doctor’s surgery has no BSL. I rely on people, asking them is it my name? I told them I am Deaf...I always keep my eye on everything, watching what they say...It can be stressful, I am quite fed up with that....I keep my eye on what is going on and someone lets me know. Importantly, I let the reception know that I am Deaf. It can be a bit stressful.” (PP36)

“I would like improved access to things as I use public transport a lot, like the bus and the trains and they have loudspeakers that I cannot hear. I feel frustrated as I miss out on information.” (14) 4

We have numbered the participants in the study and these are used to anonymise the quotations 4but yet to allow the attribution of the statements to particular individuals.


The problems of public service locations, particularly in health centres and hospitals is a common topic of complaint for Deaf people. It usually represents the use a technology which disadvantages those people who do not hear. Participants also reported barriers to gaining employment and equal access to services and information.

“Angry! Example. Last Friday I wanted to watch a special programme, called 'CSI'...I was all ready to watch then the announcement came up saying 'sorry no subtitles' I was so angry. It is not fair. When the hearing can have an advantage to watch 'CSI' and not Deaf.” (3)

This disadvantage in comparison to hearing people produces a strong sense of indignation at being excluded from an anticipated leisure activity. These are seen as everyday occurrences and part of the Deaf experience when marginalised.

Where linguistic access was unsatisfactory, most participants reported employing alternative strategies to gain understanding. Most commonly cited was the use of lipreading and writing as a means of communication where signing was not possible. This was seen to be an acceptable alternative where the communication took place in close contact with one other person, was brief and did not require understanding of what was perceived to be detailed or complex information. Here a respondent describes how he felt about using lipreading and written English for communication:

“It's really difficult to communicate like that. Not so much at the doctor's, I can read their writing okay. But maybe at a tribunal, I would have to have an interpreter there or at the hospital.” (10)

Around one third of participants reported accessing more incidental and environmental information visually, such as observing body language, non-verbal signals and taking cues from the behaviour of others. In many cases, this was seen to be less satisfactory as it did not allow the participants to relax, requiring more effort to deduce their surroundings from sometimes ambiguous indicators.


“I have to rely on people moving on the platform and this means I have to find a member of staff and ask them for help.” (14)

One participant, however, responded positively to gaining understanding by using these alternative perceptual means:

“I watch closely and carefully so I am able to follow and I use my imagination as to what is going on! It makes me creative, compared to subtitles as they tell me what is going on and I'm not keen!” (22)

Here, the interaction between the participant's imagination and the information available is viewed as an enjoyable process, where he or she may impose their own interpretation of events without the challenge of deciphering written English.

There was also a factor of the familiarity which the participants associated with key individuals. Interactions with others who have knowledge of these respondents’ histories, contexts and needs appeared in some cases to create increased trust and confidence. Access is not only an issue of practicalities such as the physical environment and language but also that it has a psycho-social component. The following quotes indicate that predictable continuity is a factor that can mitigate against stress and make for positive outcomes:

“I am happy at the doctors as the doctor knows me...While this doctor knows that I am Deaf and always waves at me. I’m more confident and happy.” (7)

“Yes, reception know that I'm deaf. They will tell me when it is my turn...It is easy. My doctor understands what I say.” (33)

“If it is for general services, like the doctor’s, then I use my priest as he knows my background. I feel if I use an interpreter I would feel I had to repeat myself, but with my priest he knows my background” (22)

The routine created by repeated contact with the same person leads to a trust being developed, even when the communication itself is incomplete.

Access is a crucial issue in the minds of Deaf people.


3.2 Barriers

Twenty-five Deaf participants discussed barriers, primarily in the general areas of communication, accessing information, socialising and leisure activities, employment and education. Of course, there were often overlaps and participants commonly faced barriers that were interwoven and compounding. The way that the majority of participants described the barriers they faced, showed that they perceived them to be external – as the result of an unsuitable environment. However, a small number did report feeling that the barrier was as a result of their own weakness.

For example, two participants felt that they were limited by their own English language skills:

“the problem is communicating, I don't have very good English...I feel ashamed if someone starts talking to me and I can't understand and tell them I am Deaf, I'm frightened of what they would say.” (17)

“The teachers write on the blackboard with their backs to me, and they talk at the same time. I did not understand them. I didn't know speech. I'm not very good at English.” (20)

These participants appear to have internalised a sense of responsibility for the barriers they face. It is interesting to note that the first of these respondents has neither English nor BSL as a first language, having moved to the UK as an adult. The second respondent appears to have experienced an oral education, typical for someone of their age, between fifty-one to sixty-five years old. Another participant, also in this age group and discussing their experience of oral education, perceived the barrier to be deafness itself:

“I do not have any qualifications. I kept failing because of my deafness – I wasn't allowed to sign so I was only allowed to speak. I was repeatedly taught how to speak my 'T's and I became fed up. We signed when we went out to play and got told off by the teacher who then told us to speak.” (23)

The remaining twenty-two respondents who described facing barriers, perceived these to be external. Communication problems caused by the


paucity of sign language users and interpreters was most commonly cited, followed by the negative attitudes of others, then the inaccessibility of written English. The following example is characteristic of the isolation experienced as a result of being excluded from group communication:

“I want to paint...so I went to evening classes at college but the communication was a big problem. Before I used to go to art classes but I wasn't satisfied because I would paint and the teacher would come up, look at my painting and say 'very nice', then walk off. There was no discussion. I realised with art, you need criticism, praise and to share your feelings about the painting. I was just painting myself, everyone said it's good but that didn't mean anything to me. You couldn't share your interest with others. I thought of self-tuition, again I felt lonely.” (18)

Here, we could say that the barrier arises through the participant being in the minority because he has a different language from that of the larger, surrounding group. This was a theme which arose repeatedly throughout participants' discussions about barriers, indicating that the obstructions were perceived to be a result of their difference, which was then viewed as deviance from the norm. Six of the participants actually referred to this inequality between themselves and the hearing majority as being a barrier, for example:

“One situation I faced at university is being the one Deaf [person] and [it was] always [a] problem being the last or beneath hearing” (4)

The same participant discussed the converse situation of Deafness being the norm and therefore feeling no barriers:

“...because I come from a Deaf family and I feel natural. No label/any barrier against me or my family. We are positive and nothing around can affect me, we equal...” (4)

As with Access, the topic of barriers looms large in the thinking of Deaf people – most of the time, the barrier is perceived as external to the Deaf person.


3.3 Lack of awareness

One of the most frequent complaints of Deaf people is that hearing people are not aware of them nor of their needs and perspective on the world. This is usually expressed with the sign for ATTITUDE, implying that there is some conscious aspect to the rejection of Deaf needs. Hearing people are often classed as having good or bad attitude.

The usual comments are that hearing people seem to reject or ignore Deaf people in daily life because of a lack of knowledge of how Deaf people approach their work and social activities. Many of the contributions under this theme were examples of when hearing people had not been ‘deaf aware’.

One of the classic situations is when going to the doctor who is perceived to have a bad attitude.

That happened to me a lot, I hate that. I arrived at the doctors, go to reception let them know I’m here, I told them I am Deaf, wrote down my name. I was told to go and wait there (points). I hate the arrangement. Chairs all around the room and have same poles (columns) blocking my view. I cannot see. A man came, shouted something, somebody got up and went. Sometimes the doctor is lazy and just opens the door, shouts out and somebody goes in. I can’t see the doctor, so when it’s like that. I just wait and wait. The doctor shouted and looked, I then have to walk and check he looking at me using face expressions “your turn?” Doctor shows attitude – no patience, by using face expression. Should like come and check if it’s me, ask me, easy way. (6)

One person also bracketed the deaf awareness need inside the barrier of the communication difficulty itself. Hearing people not only do not have awareness, there is no way to get through to them because of the language difference.

I feel I can’t explain fully because I don’t have the right signs and don’t know who the right person is to do it. That’s a problem. But I explained my English is a visual language and also I reminded them that I am Deaf …. Some have good attitude and are aware, my personal tutor is aware and has been very supportive all the time since, that’s great. But one upstairs, responsible for making papers seemed not to understand and needed to change and needed to be


aware. Like I asked for a camcorder … to be filmed as it’s easy; writing is hard and the person can’t understand this, that Deaf people find it impossible to write. From her I feel that barrier, a different attitude, she needs Deaf Awareness, that’s all. (4)

The description implies a double discrimination – one because of the ‘disability’ and the second because of the lack of communication of the difference. In both of these long statements, the sub-text is the frustration of having always to try to explain to people. At times, the respondents consider the hearing people to be stupid and lazy; sometimes they express their own inability to overcome that barrier. Accordingly, the responsibility for becoming Deaf aware should rest with the hearing people according to the Deaf respondents and this is justifiable because of the lack of success Deaf people (on their own) have had to date.

In some cases, with waiting rooms, Deaf people report some success in eliciting an appropriate behaviour but often this is at the expense of identifying themselves as different. We can see that an obvious temptation would be just to avoid predictable situations where lack of Deaf awareness would lead to frustration and stress. We suspect that this is a normal adjustment for Deaf people as they become older. It would be an expected strategy for managing stress.

3.4 Communication

It is a reasonable supposition that Deaf people are concerned with and talk about their language a great deal. In nearly every discussion, the topic of sign language as communication comes up. Often, this is in the context of hearing people having to learn; sometimes it can be seen that other Deaf people do not communicate well and at other times, it is about discovering sign language later in life – ie after school. Deaf people need sign language in order to be a community. Anyone entering the community has to be able to learn to sign.

These features come out clearly in the interviews and reflect the nature of the primary barrier which might be faced by Deafblind people. An inability to sign BSL could be thought to be an indifference to the


community and might not provoke an adaptive response from Deaf members of the community.

Yet there are stories of adaptation by Deaf people in interaction with hearing people – eg using pen and paper. Those Deaf people who can speak may well try to carry on a conversation through speech and lip-reading.

Oh we ‘talk’ and write. Am good at lipreading, I try to pick it up then if I don’t understand, I write. (6)

Yes comfortable with hearing but use writing, it takes longer and doesn’t feel right, writing. Preferred to use signing, if interpreter there, I use it, they can translate. (6)

Sometimes, the Deaf person will knowingly try to cope with hearing people and see this as an important statement of independence.

Well I went as I had a problem with my hearing aid. I went there and tried to use writing but the woman there knows that I am Deaf and used speech slowly. So I explained about problem with the tube in the hearing aid. They took it and gave it back fixed. No problem there, no need for social worker, no need at all. I rather go myself. I always go myself - more private as more confidential. (7)

The problems in communication however, are usually more prominent and even within the family there are serious issues.

When I go to see my family, see my mother – she can’t sign. That was the old philosophy, that you shouldn’t sign. When I go to see her, I try to talk but she doesn’t understand what I say. She asks other people ‘what’s she saying? What’s she saying?’ and I get really annoyed with her. It’s difficult because the way I was brought up, I could never tell her anything. (10)

This final sentence of “I could never tell her anything” is a very common statement on their own hearing family within the Deaf community and carries the reality of lack of communication and the real disappointment of impoverished relations.


This is not necessarily helped when the hearing person is learning to sign. Deaf people will not always tolerate the problems of expression of those hearing learners.

The person tries to sign, they say I’m learning Sign Language, I usually walk off, I don’t bother, it’s not comfortable talking with them, I usually say hang on I need to go over there and I go off. (11)

Although this seems like a negative response, it is understandable in the context of identity and community life. It is also consistent with the Deaf view that it is other people who are responsible for making the main adjustments (even in the process of learning to sign itself). Where the relationship starts with a perceived positive attitude to Deaf people there can be a different response.

First I’d say hello, if there’s a connection there we’d start being friends then if they are interested to learn sign language I’d teach them. If they’re not interested I’d leave them and smile politely. It’s important that the connection is there, if there’s no connection then I’d leave them. (16)

The evaluation of communication is then bound up in perceived purpose of the individual and the assessment of good attitude.

Sometimes the family context has one person who is able to sign – or at least is able to sign a little. Deaf people talk about switching attention to that person and this person might even be a child. The Deaf person will then talk to and talk about this person. Sometimes this will be only a person who uses gestures.

One factor mentioned on several occasions is the reduced opportunity for signing which occurs because of living among hearing people.

I didn’t sign on Saturday but I signed lots on Friday from about seven o’ clock to twelve o’ clock then nothing on Saturday as I was mostly on my own then I finally signed on Sunday- it was like I was itching to sign! (13)

This aspect is hard for hearing people to comprehend when their spoken language is ever present in one form or another. However, Deaf people


have many fewer opportunities to use their language. This may tend to make attitudes stronger in regard to the protection of the language.

There are some people who feel they can communicate well with hearing people yet, at times, cannot and have to use other means. Here the communication discussion is dissociated from identity and culture and is expressed only insofar as it is a vehicle for information.

I have a good communication with hearing people those who do not use BSL. I always write or lipread with them. I am really used to hearing people through working with them. I usually lipread or write. I would like to teach them BSL but nobody is interested? Because they told me that I have a good voice also I speak very well and I can hear too. But sometime they cannot understand me I have to write to them. (2)

Here the somewhat tortuous argument illustrates that the basic issue in this case is of the transmission of information – hearing people feel that whatever is happening is satisfactory and they do not see the need to embrace the language as a part of the Deaf person’s culture.

Inevitably there is a great deal more to say about communication and in particular Deaf people’s perception of the centrality of sign language. The community solidarity on this issue seems somewhat weakened by Deaf members who seem content to believe that all is well and that communication is possible with hearing people through mixtures of gesture, speech and lipreading (and even writing down). This tends to be presented as an aspiration for others (ie I can communicate OK with hearing people, so other people should try as well). Yet the reality is that this level of communication relates to the simple transactions about and transmission of, information, often in specified contexts. The nature of language as a part of identity and culture as prioritised by the community is not a feature of this type of interaction. Deaf people can claim on the one hand that they are able to adjust to hearing people and on the other that their language is central to their well-being. The creation of this duality is an outcome of what Ladd (2003) identifies as colonisation – hearing society has implanted the justification for spoken language as the natural means of communication.


3.5 Summary of Contact

Not surprisingly, Deaf people view contact with others as a critical aspect of their existence. However the question of access is not measured only in language competence terms, but may be related to purpose of the interaction and the confidence Deaf people have in themselves and the trust they have in those with whom they interact. Barriers to development are viewed often in terms of language. Requests for access may be as much a cultural request for parity as they are requests for specific elements of information. − !!


Chapter 4: Deaf views on Community In this section we consider where Deaf people position themselves and how significant their membership of community really is.

4.1 Deaf Identity

This theme is a well established one in the literature on the Deaf community. It centres on the need to relate to others with similar experience and then to internalise that membership of that particular group. Deaf identity is expressed in the simple question “are you deaf?” when people meet and is taken to mean a cultural affiliation. In these interviews people often talked about identification – with either Deaf people or with hearing people. More than we might have predicted claimed that they could move between both Deaf and hearing groups.

I think it is a mixture of both. I feel it is both worlds. I am in the deaf world and the hearing world. I am happy in both. I couldn't be in just one world. It is impossible to choose one world as to me it is a mix of both the deaf and hearing world. It is both and that gives me happiness. (27)

Others described the journey from the hearing to the deaf community through the acquisition of sign language.

I grew up oral with my hearing family. Then aged sixteen I went to a Deaf Club and saw sign language. I felt great learning that and used it ever since up to now. (1)

The relation to signing of this identification is expressed in this statement from a participant in a rather convoluted way.

My number one is signing, but when I sign to you and you understand what I am saying also you sign to me I understand what you are saying, we have a bond we do understand each other and we know what we talk about in that situation. (38)

The bond referred to is the identity and from these interviews the most salient feature is the ability to communicate directly in sign language.


4.2 Deaf Community

It is generally recognised that the Deaf community is a key to Deaf life. It is particularly significant since most (at least 95%) Deaf people are not born into the Deaf community – but are rather born to hearing parents who have no knowledge of and no involvement in the lives of other Deaf people. In order to express community feelings and to join the Community, Deaf people have both to make a choice and to overcome obstacles of hearing expectations, educational directive and often distance, transport and even inertia. Being involved in the community requires positive choice and action.

Deaf community consists of the interactions of Deaf people and for most of the time, people describe their communications and meeting with others as the community itself. That is they rarely think of it in terms of services or provision by the hearing community. The Deaf community is the network of contact and interactions not the physical structure. It is not tied to a specific location and while attendance at Deaf clubs de

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